Cognitive Behavioral Therapy for Chronic Pain

I attended a seminar on Cognitive Behavioral Therapy (CBT) for Chronic Pain. It was extremely enlightening and helpful in understanding additional methods to increase quality of life with chronic pain. I have been seeing more articles and information about mental health being included in the management for chronic pain but haven't had the opportunity to yet complete a deep dive on all the information I've found. This idea of how mental health can affect chronic pain was more unfamiliar to me than I would have guessed, and it wasn't until I attended this seminar that the brief amounts of information I had been reading, finally made sense to me. I actually didn't realize either that there are CBT protocols for specific issues including pain and even insomnia. 

CBT is a therapy method that I believe whole-heartedly in for a variety of areas in life from improving mental health to even helping raise children and train pets. The premise and tools of CBT are that versatile. And when I combined the understanding I gained from this chronic pain seminar with my new knowledge of how the brain works to develop everything from how we interpret interactions, emotions, moods, to our core beliefs about ourselves and the world...holy cow, did CBT for chronic pain make even more sense. 

CBT for Chronic Pain (CBT-CP) has been researched for over two decades with strong evidence for its ability to improve quality of life. Unfortunately, not a lot of medical providers are aware of this, so they don't refer their chronic pain patients to mental health counseling. But that doesn't mean a chronic pain patient is out of luck. The manual for CBT-CP is available online, at no cost, so any qualified mental health professional can access and implement it into their therapy practice. And since it's free online, anyone who wants to implement the practices into their own lives can do so too. 

The protocol is spread across 12 sessions, although this can be lengthened as indicated. The basis of CBT-CP is that there is a connection not only between thoughts, behavior, and emotions but also with chronic pain. We know that in the cognitive triad of thoughts, behavior, and emotions there can be a cycle established that reinforces each of these aspects. For example, I'm sad so I decrease my activity participation, I then feel isolated, and I start to develop depression, my depression tells me to isolate more, this makes me feel sadder and lonelier, I then feel more depressed and hopeless, etc. Introduce chronic pain into this cycle and it also becomes reinforced while reinforcing the other aspects. For example, I hurt so I'm not going to do this activity, that makes me sad, and I feel more isolated from others, I think others don't want to bother with me because I can't do this activity, I focus on my pain, that makes me more irritable and hopeless feeling, I start feeling more depressed, etc. 

CBT-CP focuses on identifying (with collaboration from the client's medical providers) an exercise and pacing routine followed by increasing cognitive coping skills. By targeting chronic pain indirectly by addressing one's thoughts, emotions, and behavior that affect pain, it will help make it easier for a person to do what they are wanting to do and thereby increase quality of life. It's important to understand that CBT-CP does not cure or fix pain nor is perfection the goal, it is a tool for increasing quality of life in the self-management of chronic pain.

This first part of exercise and pacing allows for increased activity without the pain flares we so often experience every time we start to feel better again. When I learned this, I also had an "a-ha" moment for a deeper understanding of why I had been seeing an emphasis on "pacing" in the chronic illness community for the last several years. It was, again, a term or practice I didn't really understand and hadn't researched much. I simply did activities as I was able to, often to an extreme level, and then dealt with the consequences afterwards - whatever those might or might not be. And I didn't think about it or analyze my actions and my symptoms. But this idea of pacing would be something that I would start to have more familiarity with following my gallbladder removal as I would find myself restricted to one day of increased activity without a pain flare that would last 3 days. And to help get past the one-day limit, I finally gave into attending physical therapy. But it was during this year that I would unknowingly be playing around with the concept of pacing. 

A common cycle for chronic pain patients is: I hurt so I restrict my activity and rest during my pain flare, once my pain flare subsides, I'll engage in all the activities I can that I wanted to do before that I now feel well enough to do, but then I engaged into much for my body, and I have another pain flare requiring another rest period. However, these recovery periods become longer and longer over time and the longer the recovery period, the more deconditioning our bodies go through creating a vicious cycle of increased pain and decreased activity. 

To the cognitive coping skills part of CBT-CP, think about the 5,000-6,000 thoughts a day a person has on average. How many of those thoughts do you remember from yesterday? We have so many automatic thoughts that whip through our brain and a large number of those tend to be negative, discouraging thoughts that our brain keeps hearing and those thoughts can influence our emotions and our behavior. And when chronic pain is involved...we have even more negative thoughts. Have you noticed when you focus your thoughts on pain that you're having in the moment, that the pain tends to increase? 

Pain is a subjective experience that can only be quantified by one's subjective view or rating of it up to a degree. This isn't to say at all that pain is just in our heads but that there is a difference in the body for measuring and identifying pain levels once pain starts to affect the nervous system. 

Pain is influenced not only by biological factors but also social and psychological factors. The way that we're treated by others can affect our pain level as well as how we treat ourselves psychologically and how our body responds. 

The body reacts to pain with autonomic, endocrine, and immune responses that can increase pain and activate the sympathetic nervous system - the fight or flight mode. When the sympathetic nervous system is activated, it can be measured by heart rate, galvanic skin response, muscle contraction, and EMG procedure that shows muscle response to electrical activity. 

When I'm having to wait longer in a provider's lobby, I start to think about  how long I've been sitting there and how uncomfortable the chair is and then the next thing I know, my body is aching because I've been sitting in an uncomfortable chair for a long time without feeling able to move or walk around because the more I move, the more likely I'll have to go to the bathroom and if I have to go to the bathroom before I'm called back then I worry I'll get called while I'm in the bathroom and they'll think that I'm not there so my appointment will get overlooked or delayed even longer. So, I get into this cycle of spiraling anxious thoughts and a focus on how uncomfortable my body feels trapped in this chair for an unknown length of time. 

What can one do about this to help with chronic pain? 

The cognitive work in CBT-CP is vital as a preparation for implementing behavioral changes to address chronic pain, which in turn will address the emotions we develop as a response to pain and our health conditions. It is also important to obtain medical clearance from one's medical provider for behavioral changes to be implemented and worked on in conjunction with various medical modalities as indicated, such as neurology, pain management, or physical therapy.

An integral tool for assessing progress in CBT-CP is pain measurement tools such as SUDS - Subjective Units of Distress. This identifies where one is starting in their pain level and how it's affecting their quality of life. As the sessions continue, SUDS also identifies not only progress but also what is and isn't working for the individual. There are several different pain assessment models that can be used including ones specifically for children and nonverbal individuals. 

Once the current level of pain, its impact on quality of life, multidisciplinary collaboration and goals are established, it's time to start learning and implementing CBT itself. 

Part of that is realizing that chronic pain is not acute pain. Pain tells our body to activate the fight or flight mode as a proactive, protective response. Our body isn't able to distinguish between acute and chronic pain, we must learn how to instead. The fight flight mode is appropriate when experiencing acute pain but not chronic pain. This is because during acute pain, our body is telling us to stop or get out of the situation to protect itself, it is under threat and harm. This alarm tells us to not engage in activity out of fear of causing harm. Which can occur during acute pain with increased activity, whereas with chronic pain this is usually not the case. Therefore, due to the ongoing condition of chronic pain, the pain that one experiences no longer is a reliable warning that harm is occurring. Rather than withdrawing from activity in fear of causing harm with chronic pain, it is to our benefit to engage in activity with pacing practices in place. Movement not only helps with muscle recovery but also maintaining joint maneuverability and flexibility. When I was in physical therapy to correct the deconditioning that I experienced following my gallbladder removal, there were days that I had a pain flare following the initial sessions and with new exercises. On those days, my therapist explained the importance to continue engaging in movement so that my body would better recover and maintain progress through the pain flare. To do this, I was taught recovery exercises to complete during pain flares rather than my every day strengthening exercises. 

When we over engage in activity, our pain increases requiring longer and longer recovery periods each time as our body becomes more deconditioned during each recovery period. To break this cycle, we must engage in activity in regular intervals to recondition our bodies and reduce the chronic pain cycle of crashing and burning.

The intervals for regular activity of what a person can tolerate is extremely individualized and may require a trial-and-error approach to determine where someone's limits lie. Limits can be determined by starting with intervals of activity as small as needed. An important part of this is physical exercise to recondition the body to allow for greater activities as the sessions progress.

Identifying that one has pain when doing X activity for Y amount of time. This can be determined in two ways - 

1. I do activity until I start to feel pain and I know I need to start with a shorter time interval than that 

2. I am able to do activity for this amount of time without pain, I will increase the time incrementally to determine what time interval I can tolerate.

Pacing comes into play by stopping the activity at the identified interval and allow for a recovery period. To further reduce deconditioning, pacing amounts can also be determined by pacing at 50% rather than 100%. The goal is to reach a steady pace of activity and rest to avoid pain flares, deconditioning, and increase quality of life.

Moderation is the key principle to pacing. This is a hard concept for many of us as we are used to over engaging in activity on our good days leading to us crashing and burning. We often think that it takes less time, and we can be more productive if we get everything done when we feel our best. In actuality though, this takes more time away from us and what we may be needing to do. Moderating our activity allows for more things to be done in total with less recovery periods required. 

For example, we can go full throttle for two days straight but then have a flare that requires a week recovery.  Or we could pace ourselves for the week at a certain percentage each day of activity and rest and not have a pain flare that requires an extended recovery period.

As we rebuild our bodies with exercises and engage in activities with pacing, we can monitor our ability to increase that activity time with incremental increases to the intervals between activity and rest. This is not to say pain will no longer occur, but that with moderation we can better control the balance between activity and pain so that our chronic pain is more tolerable and what we enjoy becomes our focus rather than our level of pain. 

Relaxation training becomes more integral for quality of life with the deeper understanding of how emotions and pain affect out nervous system and therefore our stress responses. As mentioned previously, stress responses can increase pain. If we reduce our stress responses, we can reduce our pain as well. Enter relaxation training. There are a multitude of relaxation practices that one may implement in addition to breathing exercises and meditations. Relaxation exercises are not cookie cutter as some are more enjoyable or more effective depending on individual preference. Therefore, it's helpful to experiment with different techniques to discover what is best suited for a person.

The next integral part for increasing quality of life, is engaging in enjoyable activities of interest. I discovered how integral this is to experiencing joy that allowed me to start living my best life. It's the things of interest that really give us quality of life and the ability to engage those things, even when it's in a modified way, we can still extract joy from the experience.

It would not be uncommon along the way of these sessions to encounter cognitive resistance. As discussed earlier, throughout life and in reaction to everyday life experiences, we train our brains to think in certain ways. Unfortunately, we don't always train our thoughts to be the most helpful. Learning and identifying the distorted thoughts we use to view the world with allows for starting to change those negative thought patterns. There are 13 common distortion patterns that we are all guilty of using at some point or another. These include:

• filtering out the positives so that we aren't even aware of them
• discounting positives so they don't even matter
• polarizing thoughts to it's all or nothing, black or white, there is nothing in between
• overgeneralizing one thing and applying it to everything in a never-ending situation
• jumping to conclusions or mind-reading without actually knowing the real situation
• catastrophizing every situation to the worst possible situation, regardless of likelihood
• personalizing things that have transpired as having occurred solely because of ourselves
• fallacies that you have all the control or none of the control in a situation, measuring behavior or situation based off how fair they feel to us and believing that others should change to suit what we want
• blaming others for our feelings
• shoulding ourselves or others to what we expect without allowing for exceptions
• emotionally reasoning that because we feel a certain way about something, that must be a fact
• labeling or mislabeling ourselves or others with judgement and without considering context
• believing we're always right despite evidence and the feelings of others

As we become more familiar with when we're engaging in cognitive distortions, the more we will become aware of them and be able to catch them so that we can change them. My favorite way to change thought patterns is using cognitive reframing or restructuring to challenge the thought and replacement with a slightly updated new thought. 

Cognitive reframing isn't changing a thought completely; it's simply tweaking it. When we whole-heartedly believe a thought to be fact, we're going to have resistance to the idea and attempt to completely change that thought to the opposite. Instead, if we complete a simple, small tweak, we will be more successful and over time, with repeated use, that thought pattern will change.

Let's use the thought that "I can't do any activity without having a pain flare!". Breaking that thought down and earnestly looking for what activities do I do that haven't caused a pain flare, no matter how small of an activity it is. It doesn't have to be activities we enjoy even. Simply tweaking the thought from an all or nothing thought to allow for the positive - "I still have pain flares, but I have been able to do X without a flare". 

Challenging questions for that thought could include what small things am I able to do without a pain flare? (Sitting up, drinking water, however small it needs to be). When something is painful to do, how long does the pain last? Does it last the same amount for every single activity I do? Are some things less painful to do or require less recovery time? 

As we challenge thoughts and find exceptions to the thoughts, the more we give back to ourselves, the more grace we allow, and the better we become at seeing the exceptions. In turn, our behaviors change and in turn, our mood. When we feel less hopeless, defeated, even angry about something the more motivated we become and likely to do things and focus on things in life that add to our quality of life. 

Not only does changing negative thought patterns improve mental health and reduce painful emotions that trigger our sympathetic nervous system, but it also increases our coping ability with pain. 

The last piece in CBT-CP is to look at the pain and sleep interaction. Sleep is necessary for body recovery physically and emotionally. Poor sleep can increase our sensitivity to pain. Therefore, practicing good sleep hygiene and even participating in CBT for insomnia can affect pain levels.

Good sleep hygiene includes:

• only going to bed when sleep, not just tired or fatigued
• using one's bed only for sleep and sex
• if unable to sleep after 20 minutes, get out of bed and only return to bed when sleepy
• awakening at the same time every day and going to bed at the same time each night
• avoiding naps during the day
• keeping the bedroom dark, quiet, and comfortable for sleeping
• limiting caffeine intake after 2 pm
• limiting food intake for 3 hours prior to going to bed

Learning how to implement each of these parts in my life has significantly increased my quality of life and how I manage my chronic pain. It took me about a year to find and maintain an effective self-care practice of exercise, pacing, and activity for what works for me. There are times I slip back into old habits, and I have to catch myself so that I can correct. I hope that with time and practice, you'll start seeing changes soon as well.

Caregiving for Mom - The Last Years

Jenny, Mama, and Daddy

The conceptions we create of our parents over time as we grow from children to adults can be quite interesting to say the least. We come to learn new details about our parents that challenge those long held perspectives we've built, leading us to see our parents in a brand-new light.

This has been my experience with my mother and my understanding of her has a strong patient advocate. I grew up not only believing but knowing my mother to be a fierce advocate for me. I learned how to be a patient advocate for myself and others by mom's example, seeing how hard she advocated for me over the years into my adulthood even. Naturally, I presumed that my mom was just as strong of an advocate for herself as she always had been for me. And perhaps she always was. I know she was with insurance companies a fierce advocate for all three of us. But outside of the home, I wasn't there to witness her self-advocacy most of the time.

I started this article months before we lost my mom. When I re-read it to try to finish it soon after losing mom, I felt like I had been so unfair to mom about her level of self-advocacy. The day before she was hospitalized, I had even told mom, "I wish you took your health serious" in frustration when mom and dad told me that neither one of them had yet to call her Urologist two weeks after her ER trip for UTI. Mom replied "Whatever" in disgust. That's all the energy she had to spend on it. I apologized to her the next day when I saw her. She told me it was okay. I'm so glad I made sure to apologize to her.

In spite of mom's multiple health conditions that caused pain and limited her absorption, she was holding her own remarkably well until 2023 when her symptoms appeared to be out of control to me - her blood sugars wildly high with extreme lows, her mental capacity affected by relentless fatigue, ongoing urinary infections, and chronic pain. As an adult, I never shied away from sharing my medical knowledge with my mom for helping her to receive the best medical care and resources available. But I didn't interfere or assist with her medical care until 2023. I didn't know she actually needed me to but as I began to discover the magnitude of her worsening symptoms, the more I realized my conception of my mom as a strong patient advocate in a large part seemed to only be applied to her advocacy regarding my care - she wasn't using her advocacy skills for herself, and she had all kinds of understandable reasons to why that was. What I discovered through it all, was I don't think mom knew the right questions to ask and she became so overwhelmed with multiple medical appointments every week and her body was becoming increasingly tired, weak, and painful that the frustration of it all led to a bit of indifference at times that I don't think necessarily was there in years prior. 

We agreed that I'd take an active role in her medical care going forward, acting as her liaison between her and her doctors, assisting with arranging care and going to appointments with her as needed. By the one-year mark of my active role in her caregiving, she was in a lot of ways in a better place physically than she was before I took over her care. I still grapple though with trying to understand how my mom allowed herself to get into some of the situations I found her to be in because she didn't advocate for herself when she fiercely, unashamedly advocated for me even when I hadn't asked her to and especially when I told her not to, and she still did. 

With my assistance, we changed some of her providers to ones I trust. I have a long-held mistrust of medical providers on the count of my medical trauma as a child, so when I trust a provider, it means a lot. This included changing her Rheumatologist and Endocrinologist. Over the last year of her life, she was diagnosed with Rheumatoid Arthritis and was in the process of being scheduled for an infusion to reduce her high inflammation markers. She continued to have chronic urinary infections that her Nephrologist believed resulted in a bacteria colonization of her bladder and had become drug resistant. In addition to the Nephrologist, she was also followed by a Urologist who aided with managing her urinary infections. We were receiving the guidance of a Diabetic Registered Dietitian who worked in conjunction with her new Endocrinologist for her Diabetes. She also was receiving treatments from a nerve renewal clinic for her Neuropathy that had improved her mobility and balance. 

I'm fortunate that dad remains in pretty good health and together, we were able to coordinate care for mom. As someone with a multitude of chronic health conditions myself, I honestly don't know how others manage their own health and that of their loved one without help especially if the caregiver is still working. I know it was a lot at times even for dad to leave the house to run errands or complete other necessary business due to fear of leaving mom alone. A fear that was understandable and dependent upon not just the day but the hour. It worked well for us that dad was able to attend and take her to her appointments and I focused more on the communication with providers and coordinating care as I have a deeper understanding of the behind the scenes and medical details. This knowledge, sometimes an annoyance to my parents, helped them better understand the gravity at times that mom was facing and led me to have some quite frank, heart to heart conversations with my parents. 

Understandably, mom became tired of having so many doctors to see and taking so many medications. She had quite a lot more to cope with than myself. Yet, at times I struggled with her resistance when she told me she didn't want to pursue an evaluation or treatment because she didn't want to have another appointment or another medication or nutritional supplement. I struggled with my patience and empathy at these times as I was transported back in time to my high school years when I wasn't given a choice and in efforts to quite literally keep me alive, I was forced to endure repeatedly painful procedures and follow strict, absolutely dreadful protocols. Mom struggled with a poor appetite and unintentional weight loss from her malabsorption issues from multiple disorders (and as I feared, also Failure to Thrive). I often wanted to scream "I'm just trying to keep you alive!". The nutritional supplement options from 20+ years ago are significantly better in not only options available but also in taste. As a teenager I was forced to ingest foods that made me gag from the taste and odor of them but nowadays, there are protein bars that taste just like candy bars and protein drinks that taste like milkshakes. 

It was in these moments that I had to pause. Patients often feel smothered, controlled, and burdensome in regard to their caregivers and caregivers often feel overwhelmed and consumed by their concern for their loved ones. These feelings though are frequently miscommunicated in ways that hurt the patient-caregiver relationship leading to feelings of resentment. Keeping this in mind, I paused. Arguing is not helpful. Clear communication of feelings and knowledge as to why XYZ is being asked of the patient and why ABC is being resisted by the patient is helpful to come to an understanding of one another and the root issue. It's at these times that I set my parents down for a heart to heart. 

Fortunately, mom responded well to these heart to hearts and they left her with increased motivation, and we were able to devise a plan for how to still pursue an evaluation with possible treatment but closer to my mother's terms. For example, when she told me that she didn’t know if she still wanted to pursue a Hematology referral we compromised on, make the appointment as the Hematologist doesn't likely have any new patient openings for anytime soon and if it's still earlier than you'd like, schedule it further out.

While her symptoms did significantly improve after I started helping in her caregiving, the last 8ish months of her life, her health rapidly declined to the point that I knew if things continued the way they were, she wouldn't survive another year. One of my worst nightmares is losing my parents and is something I've been fervently working to process and heal from in therapy since 2022. Thankfully for my own well-being, I stopped running from the pain of processing my trauma that solidified an unhealthy attachment to my parents. I'm not sure how I'd be able to cope with the events that have been transpiring if it weren't for the intense trauma therapy I continue to receive.

In my opinion, there were 2-3 main areas of focus for decreasing mom's symptoms to allow her a better quality of life and an extension: managing her liver disease, Rheumatoid Arthritis, and urinary infections. 

We made a lot of progress alone in her liver disease by the success of her Advanced Endoscopist (two weeks before her passing) to finally and fully remove a large bile duct polyp that significantly contributed to the development of liver disease. The location of this polyp was only allowing our GI specialist to trim the polyp every 3 months in an ERCP. As the polyp grew, her symptoms worsened and each ERCP was hard on mom requiring additional recovery period. While the Advanced Endoscopist was successful in fully removing this large polyp, another polyp was discovered further up in the bile duct but was scheduled to be tackled in her next ERCP. 

She was diagnosed with Emphysematous Cystitis (EC) just two weeks before she died. EC is a UTI with a gas producing bacteria. This was particularly concerning for me as the mortality rate for EC is reported to be 7% and if not caught early, increases to 20%. This wasn't what ended up killing her though.

Combining this knowledge with my trauma attachment, was devastating for me. However, I coped much better than I would have before I started my intense healing journey in 2022. While I was fearful and anxious, I was able to navigate it with greater ease than in the past and came away from that experience with the realization that I needed to remain alive for mom to receive the care she needed, especially if her health was going to continue to decline. And most importantly, I was okay with being alive for her until her passing. This alone is an incredible display of growth on my part as I've had the long-held wish that I should die before my parents out of fear of how I would even possibly be able to cope and live without them. Through my therapy and before losing mom, I reached a place I knew I could not only envision life without my parents, as difficult as it would be, but I knew that I would be able to manage. While my life wouldn't be the same without my parents, I believed I would be able to find a way with the support of my people, to live and not merely survive. I still do not want to live without my parents, but I was able to trust that I would be able to live and accept the need to be alive for my parents' well-being during their final years. Now don't get me wrong, I still hoped we all three would have died together as my parents and I have often joked about in some natural disaster - this remains my ideal. 

Dad and I never imagined though that we would lose her so soon. I tried to prepare dad for thinking ahead because of mom's rapidly declining health. I was afraid she would require a 24/7 private caregiver or nursing home placement before long. After she was treated for the EC, she had an incredible 1.5 weeks for her. She went out and did things, went to many medical appointments and was able to go do the things she wanted as long as dad drove her and helped her walk into places. And then on that Wednesday, she started feeling worse. Thursday, she cancelled her medical appointment that day. Friday she couldn't move without dad's help, she was hardly eating or drinking anything. She refused to go to the hospital. Dad never pushed mom to do anything medically she didn't want to do. She didn't seem to take it well from dad. Whereas, with me, she did. 

I came over on that Saturday morning and dad asked me to try to convince mom to go to the hospital, to the main location, and by ambulance. Mom was curled up on the couch, she probably weighed under 100 pounds at this point if it wasn't for the loose skin of her apron belly from her abdominal surgeries. She couldn't move any amount without increased pain and of course remaining still didn't alleviate her pain either. She couldn't walk by herself; she couldn't pick up her legs onto the couch herself. She couldn't really do anything by herself. Amazingly though she was able to clearly remember her medications and when to take them. Liquid dribbled out of her mouth when she tried to drink from a straw - more than I had ever seen. She could barely talk. She had difficulty enunciating and while she could kind of say sentences, they had to be short, but the words were hard to understand. These two things alone were new, alarming developments.  

When talking to mom about needing to go to the hospital, her response was "what are they going to do? Give me fluids and antibiotics?". She was exasperated and I could tell she didn't think the hospital was going to do anything more than fluids and antibiotics so what a waste. I just thought "No, mom. They're going to do so much more." I explained to her that she couldn't live much longer like she had been the last two days, she wouldn't make it through the weekend if she didn't go to the hospital. I convinced her to go by ambulance to the hospital we knew she needed to go to for the best care, where most of our doctors are. 

I had access to mom's patient portal so every time she had any test done even in the ER, I could view the results long before the ER nurses or even the doctor came to tell us. From the lab results and when the ER doctor was finally able to see us all in person, he asked the nurses why she was still there in ER in an urgent questioning manner and when he said, "She should be in ICU", I knew we were way deeper in it than any of us had realized. We never would have guessed that mom was in septic shock, her life was second to second. The ER doctor wouldn't let mom make any decisions, he said she was cognitively impaired from the sepsis. We went against mom's wishes and made her a DNR for that day and night. And through all of this, mom had some of the best hearing she had in years and would remember things being said around her and then later on ask for clarification about what we were talking about. We were astounded. But that was mom. She was always leaving us astounded and she continued to the rest of her life up until her final breath. She was alive long after she medically, scientifically should have died. She became lucid enough in the midst of everything that while I was making the medical decisions for her, I felt she was lucid enough to be involved in her care and to know what was going on, no matter how harsh the truth was. And that's how mom wanted it - she wanted to be involved in her own care and she didn't want anything kept secret from her. She furrowed her brows I was told when I would talk quietly to any hospital employee and especially if I stepped out of the room to talk to them. And she would relax and appear relieved and peaceful when I would come back and tell her what had been discussed. She even asked me that second day in the hospital, "You wouldn't lie to me, would you?" No mama. Never. She hated it when I told her we didn't know things, she was afraid that I was hiding the severity of things from her. I just didn't know because I couldn't tell the future - I knew the current risks but I didn't know what was for sure going to happen until the day I had to tell her that we were putting her on hospice. That was when we knew there was no more hope of saving her. The only thing left I could do as a caregiver was make her last days as comfortable and full of love as I possibly could. And I did just that with the help of my dad and mother-in-law. She died with me and dad by her side. Her ever-faithful daughter never leaving the hospice facility and rarely leaving her room while her ever faithful husband took care of their home and her pets for her when he wasn't at the hospice facility.

Mom had an affinity for dragonflies the last few years of her life, she liked that they're called Skeeter Hawks. As we left the hospice facility to return to our own homes respectively after saying our final goodbyes to mom's physical body - a dragonfly was caught in the grill of mom's car. I asked dad what he thought it meant.

"I caught her". 

Watch Sharing Mama's Story for a detailed account of mom's last weeks alive, including our time at the hospice facility together. 

Post Concussion Syndrome

This has been a story in the making for over a year now. I am now released from worker's compensation and feel able to share my story with Post Concussion Syndrome (PCS).

In 2015, I fell at work and hit my head due to my blood pressure bottoming out. I didn't have a concussion from that fall, and it wouldn't be until 2022 that I would come to understand how so many of my health changes stemmed from that single fall that caused me to develop Abdominal Migraine.

In early February 2023 I fell on the ice at work injuring my head and my right knee. I didn't even land on my knee but yet I twisted it in the process. At first, I didn't think anything about it really. I immediately hurt from my fall, as I would expect. I called my neurologist's office to let them know I had hit my head so that they were aware and that I was feeling alright except for the expected pain from a fall. However, within a few hours, things started to change. I started having pressure in my head, headache, my concentration and speech were off, I felt funny. There was such a remarkable difference in my speech alone that when I called my neurologist's office back, I was told that I definitely needed to go the ER for evaluation.

My mom took me to a small, local ER. In spite of being there for concussion symptoms, the ER doctor was only concerned if I was vomiting and if I had hurt my knee and neck. He ordered a knee x-ray and a neck CT scan - both were unremarkable. He said I scored a 15 on some scale (which was really good evidently), I wasn't vomiting, and I had hit the back of my head so he wasn't concerned about a severe concussion and therefore he wouldn't order any imaging of my head. I didn't realize until after I was released that I don't think he asked me if I was having any other symptoms other than pain and vomiting. The only reason that the ER doctor explained why he wasn't worried about a severe concussion and would even use the word "concussion" with me was because I kept asking every staff member that came into my room why I wasn't having any imaging tests of my head. Word got back to the doctor, and he decided then to say anything about a concussion to me. Even then, he would only say "you might have a mild concussion". Might my ass. And the only instructions I was given were by the nurse who warned me about increased symptoms if my heart rate increased over the next couple weeks and to take Tylenol or Ibuprofen. A day or two later, I realized that I hadn't advocated for myself at all like I normally would, and this wouldn't be the last time either when dealing with my concussion, unfortunately. 

To say that I have been completely confused and scared, unlike myself in so many ways, is an understatement. A friend told me to not look at any screens and to follow up with my PCP. I told her about it and asked about any precautions/restrictions I needed to take. The only thing I was told was to limit screens. 

The night of my fall, my entire body hurt - every single joint and major muscle group was flared. I hurt almost as badly as did following my gallbladder removal surgery when my nerve pain kept me bedbound for 4 months except for the time I went to work. Four days later and looking at screens still triggered or increased my headaches. Since my injury occurred while at work, I was followed by worker's comp and bound to their rules and recommendations. With my symptoms no better after the 4 days the ER doctor wrote for me to be off work, I was directed to 3-4 different nurse practitioners to manage my care at an urgent care contracted with my worker's comp. I wasn't assigned to one nurse practitioner, so I never knew who was going to be the one to manage my care that week when I would return for each follow up visit. The time I was allowed and restricted from screens changed every week. But by my 2nd visit back, there was concern about my knee that I twisted in my fall and was referred to physical therapy. There the physical therapist told me I likely had an injury to my outer meniscus and was allotted 6 sessions of physical therapy to strengthen it as it healed. 

In the meantime, I was still experiencing headaches, memory loss, loud noises bothering me, excessive crying at sometimes nothing at all and other times if I was overwhelmed in the slightest, misreading signals so I thought everyone was mad at me with absolutely no evidence, numbness, difficulty concentrating and forming sentences when my headaches were really bad. I differentiate between how noises bother me - usually when a noise bothers someone it hurts their ears but for me, noise hurts my brain. One day, I had the worst headache I've ever had in my entire life. My entire head hurt immensely and every few seconds it felt as though I was being forcefully struck on the top of my head repeatedly for about an hour. It took Tylenol 45 minutes to start to lessen the pain. I struggled with my short-term memory for a long time, and it was very upsetting to me. I couldn't remember things like where I had found a coffee I liked. One week, I bought a to-go drink from somewhere that I sipped on for several days. By the end of the week, I looked at this generic cup and realized I had no recollection of where I had obtained this cup from. While most of the things I couldn't remember weren't significant it was the mere fact that I couldn't remember that was extremely upsetting and would lead to crying spells.

There were so many days that I was completely convinced that Mike was ending our life partnership with absolutely no reason to think this. The most frustrating thing? I wasn't even feeling depressed and yet I was more emotional and crying more frequently than I think I usually do when I am depressed feeling. It literally was as though I suddenly lost all of my coping skills. I could only handle feeling overwhelmed, overstimulated, stressed for about 5 minutes max before I would break down into tears - and sometimes I couldn't stop crying for 2 hours or more. My neurologist told me that I needed to address this in my mental health counseling or as my brain heals from the injury "it will get stuck like that". Great, like that didn't add even more stress to me during this. My counseling had to be placed on hold though as my cognitive behavioral therapy was virtual so there were times I couldn't be on the computer, and it was unsafe to undergo EMDR therapy due to risk of seizure with a concussion. 

After a few weeks, with symptoms not improving and probably only because I had a crying spell with one of the nurse practitioners, a brain MRI was ordered but didn't show any explanation for my continued symptoms and then after a couple more weeks, I was finally referred to a neurologist. The majority of this process I felt completely confused, no idea what to expect, no idea if what I was experiencing was normal, and feeling terrified this would be how I'd be for the rest of my life. So, to finally be allowed to see a neurologist was a large relief...except though of course, my anxiety of providers I'm not familiar with and my fear of being dismissed and overlooked, misunderstood as a rare disease and medically complex patient. 

The earliest availability with the neurologist I was referred to was mid-July. My case manager and adjuster both agreed this was too long of a wait for me to be seen by a neurologist and asked if my neurologist would accept worker's comp and see me instead. My neurologist, a saint of a man, agreed as a favor to me because he knows me well and is aware of my mistrust and fear of new providers. 

With all the approvals in place, I was able to see my neurologist who advised my brain looked good and cautioned me to only use analgesics 2-3 times a week, not daily, as it could worsen my headaches. Instead, he wanted to focus on preventing my headaches and prescribed Topamax for me to try. It would take up to 6 weeks to become fully effective and has some bothersome side effects and so it's recommended to take it at night so that one sleeps through the side effects. This, of course, had to be approved by my worker's comp team before I could obtain the medication though. My neurologist also recommended that I discuss with my adjuster the logistics for me to have a reduced work schedule to allow time for my brain to heal. He told me that my brain hadn't been getting the time it needed to heal and jumping straight back into work and usual activities hinders the healing process following a concussion. Additionally, he advised me that my difficulty to remember words, using word salad, saying phrases backwards and even repeatedly saying the same thing over and over were all a signal that my brain was needing a break, it was working too hard. 

I indeed did experience side effects from the Topamax - namely numbness. Both of my arms became numb, and it was bothersome, but I was willing to withstand it if it would help my brain. However, by the 3rd night on the Topamax my legs became numb and were hurting. I could barely sleep that night from neuropathy like symptoms in my legs. I thought perhaps taking a hot shower would help my legs feel better. That was the wrong move though as I nearly fell more than once in the shower due to the severity of numbness in my legs and I couldn't feel how hot the water was, so when I got out of the shower my body looked like it had a severe sun burn. I called my neurologist that morning who immediately switched me to Candesartan. Migraine prevention is one of the off-label uses of Candesartan as it is actually a high blood pressure medication. Again, he instructed for me to take Candesartan at bedtime in case it made me drowsy, and it would take a while for it to build in my system. He also advised he wouldn't want to test if I no longer needed the Candesartan for at least 6 months and possibly not until a year. I also required worker's comp approval to try this medication and then again, each month to obtain a refill.

Let me tell you, I am in love with Candesartan. It is an old medication, and I don't have any negative side effects. It doesn't make me drowsy but if I take it at the right time, it allows me to actually sleep well throughout the night. I have never slept as well, especially continuously, as I do with the Candesartan. It doesn't leave me feeling groggy the next day either like all other sleep aids/medications do. And of course, the very best thing about it is it does help reduce my symptoms to a tolerable level. I have not recovered to how I was prior to my fall and am not anticipated to return to that baseline either. I did require my dose to be increased as one missed dose caused a several day flare of my symptoms and one missed dose shouldn't lead to such a long recovery. 

Loud noises, overstimulation, and the decreased frustration/stress tolerance levels have been extremely difficult to navigate as they feed off one another and would then trigger a Migraine headache. Loud noises start to overstimulate my brain, as I become more stimulated the less I can tolerate and the more emotional I become the more likely I am to cry and every one of these things trigger headaches for me. There are also times that the slightest noise is too much for me and I need complete silence. I have been unable to find headphones that cut out 100% of noise but I do have noise cancelling ear buds and headphones that Mike got me to help reduce this cycle. There are times that I require using both my earbuds and headphones simultaneously as the noise is too bothersome with just one. Certain sounds and frequencies are at times more bothersome than others and at times they're not, there is no 100% consistent predictability to what will trigger my Migraine headaches. To make it worse, when I can't escape noise, it has triggered a form of anxiety in my brain that has at its worst required me to use all my strength to not smash my head into something to try to make my brain stop hurting. There have been plenty of days that I come home from work, and I message Mike "I'm lying down, leave me alone until I get out of bed" and he knows that means my brain is requiring complete silence and darkness to recover to a functioning level again.

In the midst of all these events transpiring, I was crying at nearly every turn due to my anxiety and fears coupled with my loss of coping skills since my fall. Once I was able to resume counseling, my counselors started working on identifying the root cause of my emotional distress and loss of coping skills. And we came to the conclusion that while a symptom of PCS is a lower tolerance level for stress and frustration and increased emotionality, trauma was also contributing to my increased emotional state. It was as though I had been transported back in time to when I was 9 starting with my first surgery. As a 9-year-old, I didn't have any coping skills, everything was new, confusing, and scary. Which was exactly how I'd been feeling. I didn't have any providers I trusted then or in the beginning of my concussion. It'd been a week-by-week trial and error for me and Mike trying to fine tune the best things for me and him to do to help me. And it's during this that I realized I need Mike and I truly don't know how I would be navigating all of this emotionally without him. Perhaps that's why I was convinced he was leaving me even. I was letting him closer to me than I ever had before, something that is scary to me, something against the vow I made to myself following my divorce. It was all too much at once and I felt vulnerable on all fronts. 

Mike's been really great though throughout. He makes every effort to answer my calls or call me back as soon as he can because he knows that I'm calling because I'm spiraling, and I need him to help walk me through it into calmness. He pays attention to all the random, useless information I tell him so that when I forget something, he can help remind me and prevent a spiraling episode. When we're in person and I start to spiral, he physically makes me stop and just breathe with him. And it was working! Slowly, over time I've required less time to calm even by myself and lengthened my tolerance level for stress, frustration, and overstimulation. Over a year later and all my symptoms are still not at the level I had pre-PCS but it's much closer at least and much more tolerable. Sometimes I'm able to go almost two weeks without crying from my decreased stress or frustration tolerance level and increased emotionality. I no longer feel insecure about my relationships with others, and I can tolerate loud noises for longer periods before requiring noise cancelling headphones. 

Once my symptom improvement maintained but I was no longer seeing improvements, my neurologist and I agreed that I had achieved maximum medical improvement and not anticipated to ever return to my baseline. My worker's comp then scheduled an Independent Medical Exam by another neurologist at my 1-year mark of my injury to determine if I still required the Candesartan. 

I finally received the notice that my worker's comp case was being closed as the independent neurologist found that I have achieved maximum medical improvement and my medication and any other future claims related to my injury would no longer be covered under worker's comp. Simply put, my PCS won't get better and even though I have only improved as well as I have because I am taking Candesartan, worker's comp has cut me off and doesn't find that Candesartan is needed to maintain that improvement. However, I expected their ruling and while it does suck to have to pay for my medication for the rest of my life it also means that I don't have to jump through any of the hoops that's required by worker's comp to obtain the continued care I need for my PCS. 

I hope I never have another fall again. I am particularly careful now when walking as my brain can't handle continued injuries. This is my second fall as an adult with a head injury that caused a new life-long condition. 

If you or someone you know receives a head injury, I implore you to take it seriously. Concussions are no joke. Seek out the care of a neurologist for monitoring and possible treatment options. 

La Mémoire Noire

La Mémoire Noire or The Dark Memory is a letter series written to my first surgeon. The man who caused everything ultimately in my life to reach this point today. I was to have 2 surgeries beginning at the age of 9 and his surgical errors altered the course of my life. Ultimately, I instead would require 7 surgeries and experience repeated life-threatening complications resulting in medical PTSD, suicidal and homicidal ideation. This is trauma I am still trying to heal from nearly 30 years later that has touched every aspect of my life and how I react, view, and process the world. I have a lot of hate and anger for this man. As part of my therapeutic efforts to heal, I am writing this series to him. It is my raw, unedited thoughts and feelings towards this man and all that transpired following my first surgery that he performed. It will be a series that is periodically updated as I process each letter, my trauma, and continue inching towards healing embodying full love and forgiveness for myself and others.

When You're Eager for Medical Testing

 

I don't think I've ever been so excited to undergo medical testing as I have this last year. I felt like I was literally begging for any medical test to be ran and I wouldn't even say I felt that way during the 6.5 months I spent seeing 7 specialists to ultimately diagnose my Abdominal Migraine. Sure, I was willing to do any test, but I didn't realize at the time that I needed tests to be done...I didn't have any idea of what needed to be done to determine why I was having debilitating pain that kept me bed bound for the day except for my time spent at work. But this year has been different. In fact, everything has been different ever since my gallbladder removal in August 2021 and I believe this present issue stems from that surgery as well.

My gallbladder removal exacerbated my undiagnosed Abdominal Migraine and I believe it also kickstarted something else - what exactly is yet to be determined. Let me back up and I'll give a brief timeline for understanding. 

• August 2021 - gallbladder removal, chronic debilitating pain starts following surgery. I'm started on Lyrica in December. After surgery, I begin losing about 10 pounds a month until February because I have no appetite and Mike forces me to eat one meal a day. In March, I started to gain a small amount back and then hold steady as my appetite improved a bit.
• April 2022 - diagnosed with Abdominal Migraine, Amitriptyline medication is added to the Lyrica. Sometime between April and July, I start noticing that not only do I feel full easily and quickly but I also feel like I need to vomit.
• July 2022 - I start vomiting whenever I feel too full. It literally feels like I have food all the way from my stomach to the back of my throat. If I don't vomit, I continually regurgitate it and swallow it on repeat until I lean over, open my mouth, and squeeze my stomach. This is not vomiting caused by nausea. This will begin to progress to increase in frequency and ease to the present day. My weight continues to incrementally increase again until by January 2023, I have gained back almost all of the weight I lost following my gallbladder surgery. 

This entire time, I'm keeping my GI specialist informed. I started asking for an EGD, even though I wasn't due for another one until 2023. He tests me for C. Diff, he's monitoring my labs but everything keeps coming back fairly decently. In spite of vomiting up to 3 times a day, I'm maintaining weight. Some days I don't vomit at all. Most of the time when I do vomit, it's not immediately after ingesting food or drink and I don't always eat healthy foods. So my body is still able to get enough calories and nutrients to sustain itself. We try adjusting PPI dosages and trying different PPI medications. I undergo a food test study where I eat a meal with radioactive substance that is recorded in a body machine to determine the rate my stomach empties into my small intestine - to determine if I have gastroparesis. It shows my stomach empties food faster than someone with gastroparesis. 

In December 2022, I finally undergo an EGD...but it's pretty normal, some mild gastritis but no unusual acid found, no bile seen at all, esophagus looks good, my usual polyps are found, no sign of a hiatal hernia. I ask to complete a SIBO test, just in case. It came back as suspected SIBO...but I question the accuracy because I think I may have skewed the results by doing my baseline breath sample twice because I was uncertain, I had done it correctly at first. But either way, I completed a round of two antibiotics for SIBO. Nothing changes. 

The only thing that reduces the vomiting, not eliminate it, but reduce it is not ingesting anything. However, I discovered during a partial blockage that when I don't ingest anything...my body will make me vomit bile - and that was one of the most, if not the most, awful taste I've ever experienced. 

I undergo an EGD with Bravo Test to check the PH level of my stomach acid. For 10 days before the attachment of the Bravo test capsule to my esophagus, I had to stop my PPI. This resulted in vomiting bile that tasted of pure lemon juice. At least it was better than regular bile taste. My throat becomes inflamed and irritated though from the vomiting of bile without the protection of my PPI. The Bravo test comes back with significant acid reflux and esophagitis. I'm still not sure why I needed to complete this test because I've been diagnosed with GERD since my colon removal in 1995. However, my GI assured me that it would be helpful in identifying what may be going on and what steps to take. Oddly enough though, the surgeon I went to in 2021 for a second opinion about my hiatal hernia following my gallbladder surgery recommended an EGD with Bravo Test. The reason he did, I've since forgotten because my hiatal hernia was so small at the time, he wasn't even positive I had a hernia. And I wasn't having the urge to vomit or uncontrolled acid reflux. But fast forward, and I'm going to have that test done anyway. Fine by me, just as long as we're doing something to identify the cause for my vomiting and can attempt to resolve it. 

The next test to complete is an Upper GI Series with Small Bowel Follow Through. Essentially, I drink barium contrast and images are taken as my body digests it to help evaluate for small bowel obstruction. In my experience, this hasn't been very helpful except to say yes, I do have adhesions or in the case of when my small intestine wrapped around itself. But this type of test was unable to determine there was a stricture around my small intestine from adhesions resulting in my near death from excessive vomiting and diarrhea. That was only discovered through exploratory surgery. However, I am willing to undergo this test. It is just one step closer to something else being done and a checkmark for insurance requirements for further testing. My GI wants to do this test though due to my history of a stricture around my small intestine caused by adhesions. He thinks that small bowel obstruction could be contributing to my vomiting, and it very well could be, that is what caused my vomiting in high school after my ostomy reversal. 

The following week I will undergo an Esophageal Manometry. I had a PTSD related panic attack once I looked up this test. A tube must be inserted through the nose into the stomach and then the patient swallows while the tube measures the motility of the esophagus to test for different conditions. I absolutely want to do this test but I'm terrified of being awake while this tube is placed. I think this test is necessary as I've thought all along that there is something wrong with my esophagus. Fortunately, my GI agrees to place the tube under sedation and to allow my dad to be with me during the test to help calm my trauma responses. This is scheduled for May 11. Just like the EGD in December 2022, I am 100% ready to do this test. I am excited, eager, impatient to do this test. In fact, let's do any and every test that may possibly answer why I'm vomiting so it can then be treated. 

In all reality, I anticipate I'm likely facing surgery to resolve my vomiting at some point in the future. The Esophageal Manometry can help to diagnose or rule out a few conditions, majority of which can be treated with surgery. I accepted a long time ago that I would likely have future surgeries and at this point, if surgery is what will help resolve the vomiting...I'm eager to undergo surgery too and the sooner the better. I just want to identify the source and work on a treatment plan to resolve it. 

Advocating at Medical Appointments

Self advocacy is often a trial by error skill that we learn out of necessity with chronic illness. Each encounter with a medical provider may be different and can be a teaching opportunity for us. Studies have shown that the more someone is motivated to be involved in their healthcare, the better health outcomes a person has. Self advocacy quite literally can make the difference in better or poorer health. 

I've been fortunate to be able to learn from my mother as I watched how she managed not only her own health with Familial Adenomatous Polyposis but also how she managed my medical appointments when I was a child and teen with the same health issues. I watched her in her dealings not only with medical providers but also the insurance and medical supply companies. My mother is a fierce advocate and I learned a lot over the years from her. Here are my best practices that I use for myself for my medical care.

• Research

            The first best thing one can do is be armed with information in advance of your medical appointment. I research my symptoms and my health conditions on a regular basis and I gather information from a variety of sources - health websites, medical studies, medical communities, and medical providers I personally know. 

Knowing about one's health conditions and symptoms is vital not only for personal knowledge and self-advocacy but also to improve coping and adjustment to health issues. Giving up control of one's healthcare management to providers without any input or understanding of health conditions and treatments allows for opportunities for treatment options to be missed. 

Gathering information from various sources increases the identification of possible health conditions causing new or worsening symptoms, alternative treatment options that haven't been tried yet, and different medical tests to request.

For instance, I abruptly started having chronic nausea in 2015 after a hospitalization. The standard treatments of oral Zofran or Phenergan were not effective in controlling my nausea. I researched other medications and remedies for controlling nausea and I asked my online medical communities what has worked for others with chronic nausea. After a lot of trial and error and trying various over the counter and prescription options with my doctor, I was able to effectively control my chronic nausea with Compazine and peppermint oil. If I hadn't researched other options and requested my doctor to prescribe medications I was requesting, I wouldn't have been able to find a tolerable solution to my nausea management. I do the same with requesting medical tests and procedures to be conducted when I'm having a new or worsening symptom - whether that's a lab test or procedure such as a scope or imaging test.

• Specialists vs. Primary Care

For appropriate care to be provided, it is crucial to be followed by the appropriate type of doctor for the condition requiring evaluation and treatment. Primary Care doctors are a great place to start for evaluation but if it is a condition outside of general care, we need to be seen by a Specialist for that condition or part of the body. Primary Care doctors have a general understanding of the body whereas Specialists specialize in specific conditions and parts of the body.

When seeking the care of a specialist there are several ways to find a specialist you're looking for. Such as obtaining recommendations or referrals from your existing doctor(s), requesting a list of Specialists from your insurance plan, recommendations from other patients in the chronic illness community, and online medical databases that also provide reviews. Depending on the condition and one's area, some patients choose to be seen by a Specialist outside of their state. 

I am under the care of 7 Specialists and none of these issues should be managed by a Primary Care doctor, they require the care of Specialists:

1. Gastroenterologist manages my GI rare diseases and everything that comes with them and the GI organs I'm missing as a result. He monitors my lab values regularly, adjusts medications as needed, completes my upper and lower scopes on a regular basis, monitors my liver, etc.
2. Hematologist manages my anemia. While my GI Specialist is able to manage my anemia through oral medication and iron infusions/transfusions as needed, a Hematologist specializes in blood disorders and has an even better understanding of my anemia than my GI specialist.
3. Nephrologist monitors my kidney. I have renal cysts that she monitors via ultrasound annually, treats my UTIs, and monitors my lab values regularly. She manages my Vitamin D. While my GI Specialist is able to manage my Vitamin D levels and medication, Vitamin D and the kidneys are intertwined providing my Nephrologist a better understanding of this connection.
4. Neurologist manages my Abdominal Migraine. Once I obtained a neurological disorder diagnosis, my Neurologist began managing my medications to treat the Abdominal Migraine including the pain and nausea that it causes. Previously, my GI specialist was ordering my Lyrica and nausea medications when we believed it was solely a GI issue.
5. Endocrinologist monitors my thyroid. With FAP, a yearly ultrasound of the thyroid is needed to monitor for cancer risks. She also monitors my thyroid via labs as well. 
6. Gynecologist not only monitors my reproductive health but she also monitors my hormones to ensure my estrogen is within range and not worsening my Abdominal Migraine. My organs are adhered to my abdominal wall and pelvis by scar tissue and I have a large ovarian cyst, she monitors these issues to determine if either are attributing or worsening my pain levels and to treat the issues as indicated.
7. Dermatologist monitors and treats any skin issues I have. While I don't require regular appointments at this time, she has treated me for cysts and scars from my abdominal surgeries that weren't healing. 

• Request and Review Medical Records

Obtain copies of all of your medical tests and procedures including history and physicals. Request the images of any imaging tests done. While the majority of people aren't able to read their own imaging disks, it can be helpful to have them on hand in case a future provider would like to see the images. Review your medical records, compare them to previous records, and ask questions to your providers about any concerns or questions you have in your records and test results. Keep a copy of your medical records in a folder to take with you to doctor appointments, especially with new providers.

• Track Symptoms in Detail

Keep track of your health symptoms and any changes to them in detail so that you can accurately and fully discuss your symptoms with your provider. 

• What the symptoms are and what they feel like
• When they started, changed, or stopped
• Duration of symptoms
• What affects the symptoms - medications, foods, etc

• Keep a List of Everything to Discuss at Appointments

Medical appointments can easily veer off track from how you anticipate they'll go and it can be easy to accidently leave out information or questions. To stay on track with your concerns and questions, keep a list of everything you want to discuss in your medical appointment - questions, symptoms, concerns, treatment or test requests, etc. Take with you any applicable medical records or research to your appointment with your list of things to discuss.

• Create Online Accounts with Medical Providers

The easiest way to communicate with your doctors is to create online accounts. This is easier for you and for them. This saves you time waiting on hold and will reduce your wait time for a response. It is much faster for a provider to read your question or concern and reply to you than to try to reach you via phone. Some providers have online portals but don't check them as regularly as others. Ask your provider what their process is with the online portals. If you have sent a message and not received a response back within a week, call the office. 

Another benefit of the online portals is I receive electronic copies of all my labs, office visit summaries, medical procedures and tests that are completed with my lab and hospital system. I can also request records through my hospital online portal without having to call or fax a request. 

• Maintain Regular Communication with Providers

If you have a change in health or a concern and don't contact your doctor in between your appointments, they will assume everything is stable. For your doctor to best provide care, it is essential to maintain regular communication with providers to alert them of any health changes, concerns, or questions you have. They are unable to help you if they don't know something has changed in between appointments.

The easiest way to maintain communication is via online patient portals, however, calling the office remains better than waiting until your next appointment when there's an issue. 

My GI specialist says I use my online portal more than any other patient of his!

• Avoid HMO Insurance Plans

HMO insurance plans significantly reduce your medical care freedom by requiring referrals to see other doctors and also have a smaller in-network selection of providers. If at all possible, choose an insurance plan (i.e. PPO) that doesn't require referrals. Having the freedom to schedule your own appointments with any in-network doctor saves you valuable time, stress, and increases your ability to access medical care. 

As a child, when I started having chronic abdominal pain, my parents had an HMO plan. A referral to a GI specialist was required by the PCP in order for me to be evaluated. My PCP refused to refer me for evaluation stating I "was just a whiny child". My parents had to change to a PPO plan in order to obtain GI evaluation and it was discovered I had inherited Familial Adenomatous Polyposis from my mother and a year later I required my colon to be removed due to my colon polyps starting to turn cancerous. The possible alternative outcomes at the time are countless and unknown due to delay in care caused by having an HMO plan and a PCP who refused providing referrals. 

• Obtain Consultations 

Don't hesitate to ask to be seen by other medical specialties for consults and second opinions. If you have a PPO insurance plan you can find a provider in-network and schedule a consultation without requiring anything from your existing doctors. Specialists are trained to focus primarily in their area of expertise and while your health issue may not be in the realm of another specialist, there's no harm in obtaining a consultation to confirm if something else is occurring.

For instance, I have been having chronic pain shortly after my 8th surgery to remove my gall bladder. After my surgeon released me after ordering a few tests to try to determine the cause of my pain, my GI specialist took over the evaluation. I obtained a second opinion from another surgeon and without success from the tests my GI specialist was ordering, I scheduled an appointment with a Rheumatologist and Neurologist for consultations. Rheumatology was unable to identify any issues in their field but the neurologist was able to provide me a diagnosis and treatment plan for my symptoms. It took 6.5 months and consulting 7 specialists, but I finally was diagnosed with Abdominal Migraine. 

• Ask About Differential Diagnosis

A differential diagnosis is a list of possible conditions that share the same symptoms. This is not a final diagnosis but rather a theory of possible causes for particular symptoms. Once you have this list, then you can ask your provider about each potential cause of your symptoms - why does your provider think or doesn't think X is causing your symptoms and so forth through the differential diagnosis list.

• Request Explanation and Documentation of Denied Medical Requests

If you ask your provider for a certain medical test to be performed or a medication to try and your provider refuses to order the test or medication, then ask why that test or medication isn't being ordered for you. After receiving an explanation, if you still believe the test or medication should be ordered and the provider refuses again, tell your provider that you want your request, the provider's refusal to order the requested items, and the reasoning for refusal to be documented in your medical chart. 

• Change Providers

If you aren't comfortable with any of your doctors, discuss your concerns with the doctor and if the issues aren't resolved, you have the right to change providers - essentially firing them. This can be more difficult if available providers is limited by HMO insurance plans or the area where you receive care (i.e. rural). If possible, it can make a significant difference in medical care if one is able to travel further for care. 

There are some instances where the process of changing providers needs to be carefully done to preserve continued treatment. For example, a dialysis patient cannot receive dialysis treatments without being under the care of a nephrologist. While a dialysis patient can change to a different nephrologist, it is vital for the patient to have an accepting nephrologist before ending care with (firing) their nephrologist to avoid any lapses in their care.

My New Diagnosis: Abdominal Migraine

After 6.5 months of chronic pain that was only improved but not cured by Lyrica, consults with 7 types of doctors, a multitude of tests and an absorbent toll physically, mentally, and financially - I finally have a diagnosis: Abdominal Migraine. 

All of my tests have come back normal from my various specialists except for my pancreas enzyme and platelets that were elevated. I underwent 2 CT scans, abdominal ultrasound, MRCP, 3 MRIs, EEG, sleep deprived EEG, EMG, nerve condition test, and a neuropsych test with all unremarkable results that provided no explanation for my new symptoms and pain. With these normal results, my neurologist came to the conclusion that I likely have abdominal migraine which is a type of migraine. 

My doctor explained that migraine is a chemical imbalance in the brain and depending where at in the brain determines what type of migraine and mine happen to be abdominal. He stated this would explain my trunk pain, chronic nausea, dizziness, scalp sensitivity, hearing sensitivity, headaches, lightheadedness, brain fog, appetite loss, and chest pain. Through our discussions and medical history review, we came to the conclusion that my abdominal migraine started in 2015 after I fell and hit my head. A couple days after the fall, I had a sudden, intense headache that pain medication was unable to treat and after that I've had chronic nausea ever since.

The only medication that's been able to manage my chronic nausea is Compazine, which is an abortive migraine medication to break through migraine symptoms. And Zofran can actually trigger a migraine and hasn't been effective in managing my nausea. To treat my abdominal migraine, he's started me on Amitriptyline which is a preventative migraine medication. 

My doctor explained that abdominal migraine is typically diagnosed among children and often forgotten about for adults often leading to other diagnoses such as IBS. Through our discussions though, this diagnosis makes sense considering all of my accompanying symptoms and the time frame of events. I'm relieved to finally have a diagnosis and a new treatment to pursue for my symptoms. 

It will take 6 weeks for the Amitriptyline to reach it's fully effective state and I've been taking it for 4 weeks now. During the 3rd week, I started noticing periods of time where I was pain free for the first time since these new pains started. I am still requiring the Lyrica in conjunction with the Amitriptyline presently to treat my pain but this may change over time as the Amitriptyline reaches full efficacy levels in my body and dosage may be adjusted. I haven't been experiencing nausea either. I will see my neurologist in another 4 weeks and any medication changes will then be decided upon as he didn't want to make any changes to my Lyrica or Compazine yet. I haven't had any changes to my appetite, although I'm not bothered by that. 

I look forward to my next neurology appointment to see what medication changes may be decided upon and continuing improvement to my symptoms now that a diagnosis has been reached. 

Colon Cancer: A Family Tribute and A Reminder

This March, Colon Cancer Awareness Month, hits harder this year than those previous. Colon cancer runs in both sides of my family and as a person with the hereditary colon cancer syndrome, Familial Adenomatous Polyposis (FAP), I particularly know the importance of colon cancer screening firsthand. 

Due to my FAP, I required my colon to be removed at age 9 as my precancerous polyps were starting to turn cancerous. A fact that was difficult to obtain as my primary care doctor had refused me the necessary referral to be evaluated by a GI specialist - a refusal that could have cost me my life. 

Colon cancer goes beyond me though. FAP runs in my mother's family. She was diagnosed with colon cancer just 3 months after I was born. My grandfather had FAP and had colon cancer as well, he later died from stomach and esophageal cancer caused by FAP. Both of their stories can be read in Touch of Cancer.

Beyond my grandfather, other members in his family likely had FAP including his sister, mother and her two brothers, three cousins, and two nieces. Beyond that, we are unsure who else has since had FAP among their family lines. 

Colon cancer also runs on my father's side of the family. In his family, my grandmother died of colon cancer and two of my aunts have had it - one being my aunt Martha who we recently lost.

My aunt Martha was extremely healthy her entire life until she developed colon cancer - likely about a year or so ago. Good genes and long life run in my dad's side of the family - several family members living into their 100s. My dad is the youngest of 7 siblings - the oldest one is still in good health at age 89.

Martha was 83 and could have likely lived a much longer life if she had completed the recommended colonoscopies to prevent colon cancer. She never went to the doctor as far as I'm aware of since becoming an adult.

She began having symptoms of unexplained weight loss, bloody stools, change in bowel habits, loss of appetite, weakness. We weren't aware of all of these changes - only the weight loss. She wasn't diagnosed with colon cancer until mid-February 2022 when she was basically forced to by my parents after she fainted upon answering her house door. As it was told to me, she figured she had colon cancer just like her mother, but she had been refusing to go to the doctor or hospital out of fear of never returning to her home. Unfortunately, once she finally agreed to be evaluated, she was diagnosed with colon cancer with metastasis to the liver and lungs that was terminal and given 8 weeks to live. 

Sadly, we lost her on March 22, 2022 - 5 weeks after diagnosis. My last visit with her she was barely able to speak and hard to understand, she had difficulty staying awake. We were fortunate to have hospice care available to keep her as comfortable as possible during the last weeks of her life as the pain did become increasingly worse.

Please take heed from the story of my aunt Martha and complete your recommended colonoscopies for prevent colon cancer in yourself. Please go to the doctor regularly and notify them of any changes in your health, any symptoms you experience. Please do your best to not be another colon cancer statistic.

My Tribute to My Aunt Martha

Martha and Me

My aunt Martha was a steadfast, loved, and integral presence in my life. She was one of several family
members who literally helped raise me from the age of 3 months. She spoiled me to no end as a child whether it was ensuring I had plenty of my own clothes to keep at her house, displaying my portrait on her mantle, or unnecessary gifts such as my 3-foot christmas stocking full of items.

She taught me to enjoy a variety of word puzzles, jigsaw puzzles, solitaire, and mahjong.

She supported everyone in her life, she was always in everyone's corner no matter what. She showed her love through gifts and loans to support others in their life goals and interests. She was ever giving and generous to a fault. She constantly put others ahead of herself even if it caused herself harm. She was ever more concerned about others, their feelings, and not wanting to inconvenience others than she ever was about herself.

If she discovered something that you liked, she would surprise you with a gift of that item even if that meant trying to give you her own possession. Even when she was in her last weeks of life, she wanted to read my children's book to show her support.

She was an avid believer in the power of positive thinking. Every time when asked how she was, her favorite response became "I'm phenomenal!" and said with as much enthusiasm as possible.

She was notorious for bad directions and odd quirks. During one trip to Texas, a route she had driven a multitude of times, she suddenly exited somewhere unfamiliar to me. When I asked her where we were going, she responded "I don't know, I just followed the line". She was able to laugh at herself during such instances.

She was my aunt, who I have held dear in my heart since infancy and will forevermore continue to do so.

Seeking Consults to Obtain a Diagnosis

In the time since my last update in the beginning of November, I continue to have chronic pain since the 2.5 weeks after my 8th surgery to remove my gall bladder and adhesions for the third time. A lot and yet not enough has occurred during this span.

Carafate didn't affect my symptoms. My liver and pancreas enzymes were elevated. My GI started me on Lyrica in December and within a week, I started to notice an improvement to my pain. While I continue to have pain, it is far more tolerable now with the Lyrica. Afterwards, my liver enzymes decreased to the normal range however my pancreas enzyme continued to increase. This triggered a MRCP to be completed which didn't reveal any new findings or issues. With the GI system being cleared, it was recommended to see a neurologist.

This month I saw rheumatology and neurology for consults. Rheumatology completed labs and started me on a trial of Hydrocortisone. While he didn't believe I had any autoimmune diseases, he wanted to try these two things in order to help rule them out as a possibility. He reasoned that while lab work for autoimmune diseases is not as accurate at identifying an autoimmune issue, trying a steroid would further help identify if an issue existed. I agreed to try the Hydrocortisone as I am allergic to Prednisone - experiencing a combination of acidic stool and painful, fragile, rash like skin that creates an awful combination for using the restroom. The Hydrocortisone is more in line with the body's natural cortisol and typically doesn't have side effects. My labs were all normal. I tolerated a low dose of Hydrocortisone without issue although I also didn't notice an improvement to my pain either. Therefore, I was instructed to double my dose. Within a few hours of my first doubled dose, I experienced the same reaction I have to Prednisone and this side effect lasted for over 24 hours before finally resolving for my body to return to its status quo. I didn't try a second dose - doubled or not - after this. With these results, rheumatology released me advising he believes my pain is a nerve and muscle system issue.

Two days later, I was able to have my consult with neurology. He had me complete different physical tests in the office and poked my pain areas with a safety pin to evaluate how pain feels to me in these areas. I'm uncertain what my reactions and performances meant, although he said there were a lot of inconsistencies in my reaction to the safety pin test as the majority of my pain areas felt dull to the pricks. 

While Fibromyalgia was mentioned, it doesn't fit my pain symptoms. Fibromyalgia is explained as having wide spread dull pain. My pain is sharp, stabbing, crushing, and squeezing with very little dull pain. This is even with the Lyrica helping to reduce the severity and duration of pain episodes. My pain migrates around my torso - from my front, sides, and back and typically is not located within the mid range of my abdomen. At times I do have pain in my hips and sometimes even my knees, particularly if my hips are hurting. Fortunately, the mid range abdominal sensations that my insides were hanging outside of my body have ceased and my incisions are no longer feeling strained. I'm uncertain if these changes are due to the Lyrica or simply time. I have also noticed significant improvement to the balance issues I was experiencing following surgery until the end of December. I was randomly nearly falling over when simply standing or sitting still at least once a week, if not more frequently.

The neurologist explained that my pain may be caused by Multiple Sclerosis (MS) and ordered MRIs with and without contrast of my brain and spine to check for plaque on my brain and/or spinal cord caused by MS as well as tumors or other growths that may be caused by Central Nervous System Cancers (CNS) due to my higher risk for CNS cancers from the FAP. He explained, if my pain isn't caused by either of these two conditions, he doesn't know why I'm having nerve pain. I wasn't surprised by the mention of MS as my pain perfectly describes MS Hugs. 

I also had a follow up with my nephrologist this month who maintains that my pain is caused by severe dehydration and I that I simply need to increase my fluid and potassium intake. While these are not bad changes for me to make, I don't believe these steps will resolve my pain.

I'm continuing to await my MRIs and will have my neurology follow up in mid-February.

I am mentally prepared for the possibility of cancer as I have long anticipated a cancer diagnosis at some point in my life due to the FAP. I am not, however, prepared for a MS diagnosis although I truly anticipate this will be the finding.

I am also resuming counseling as the last year has taken a toll on my mental health.